When we talk about healthcare advocacy, we often focus on the clinical aspects—requesting tests, seeking second opinions, or researching treatment options. But Amy’s story reveals something far more profound: advocacy is about reclaiming your identity and quality of life in the face of life-altering diagnoses.
Amy’s journey began with symptoms that many might recognize—shortness of breath, heart palpitations, fatigue, chest pain, and swelling in her legs. For two years, she navigated a healthcare system that consistently missed the severity of her condition. Even when she began coughing up blood, emergency room physicians sent her home without answers. It wasn’t until March 2023 that she finally received her diagnosis of pulmonary arterial hypertension (PAH), a condition that causes the arteries in her lungs to narrow and stiffen, forcing her heart to work harder and potentially leading to heart failure.
The diagnosis came with immediate hospitalization and a complete disruption of her life. Suddenly, Amy found herself connected to an IV pump that she had to carry everywhere, with a central line that required constant care and caused severe skin reactions. But what struck me most about Amy’s story wasn’t just the medical challenges—it was her fierce determination to maintain her identity and joy despite them.
When her doctor automatically assumed she would need to quit her job as a hairstylist and apply for disability, Amy pushed back. “Why?” she asked, challenging the assumption that her diagnosis meant surrendering everything she loved. This moment highlights a critical gap in healthcare: the focus on treating the disease often overshadows the importance of maintaining quality of life. Amy eloquently pointed out that “part of being ill is mental,” and forcing patients to abandon their passions can lead to depression that hinders physical recovery.
The mental health component of chronic illness and advocacy cannot be overstated. Finding purpose through advocacy has been healing for Amy. She started sharing her experience on social media, not for attention or pity, but to help others who might be facing similar struggles. When she received a message from someone thanking her for showing how to shower with a medical device—something so basic yet so challenging with certain conditions—she realized the profound impact sharing lived experiences can have.
Perhaps the most powerful takeaway from Amy’s story is her advice on approaching medical appointments: “Your doctor is not your friend.” This isn’t meant to be antagonistic but rather a reminder that the patient-doctor relationship should be viewed as a partnership or even an interview. She encourages patients to ask questions, request tests, and not be afraid to speak up about their symptoms—even if it means asking doctors to document their refusal to investigate further.
Amy’s advocacy journey has expanded beyond her original diagnosis. After being diagnosed with breast cancer in September 2023, she became involved with “Know Your Lemons,” a nonprofit focused on breast health education. Now, she’s working toward becoming an educator to teach young women about breast self-exams and early detection, potentially saving lives through awareness.
The resilience demonstrated throughout Amy’s story is remarkable. Despite facing multiple serious diagnoses, she continues to work part-time as a hairstylist, advocate for others, and pursue ambitious goals like lowering the recommended age for mammogram screening below 40. Her message is clear: listen to yourself, trust your instincts, and don’t give up—because nobody knows your body better than you do.